cyclelops-
Thanks for the encouraging words. I just got my Mirapex prescription renewed and took .125mg about 7:30pm tonight. I went to bed around 10:30pm and RLS slowly cranked up.
You know the drill. I sleep on a Ventilator, with oxygen, so I sleep on my right side...so any "blow by" of air misses my wife. Right leg started up...I moved so that my left leg was not on top of my right leg. Ah...relief...for about 5 minutes. Rats...I moved around to where I was on my back, with pillows under my knees so my lower back could tolerate it...remembering I am not on opiates anymore, so minor problems can push the pain level up. Nope, on my back did not do it.
I got up, took another .125mg Mirapex about 11:50pm, then ate something so nausea would not get to me. It is 12:02am and I am doing.... sort of ok.
LISTEN TO THIS...MY WIFE NOTICED I CAN SIT ON A HARD CHAIR FOR A COUPLE OF HOURS WITHOUT RLS ATTACKING. SITTING IN MY LAZYBOY....GIVE IT 30 MINUTES AND I AM IN BAD SHAPE WITH RLS. A HARD CHAIR. WOOD. Please let me know if this helps you.
Now, the other side of the coin is, my lower back does NOT like hard chairs. Darned if I do, and darned if I don't at times.
I have not tried the anti-nausea meds .... I was going to, but .... one of the side effects of my years on morphine is reduced memory. I have to write everything down.
My goodness, I just looked up Dystonia. Arrrrgh, that sounds terrible. I have not had that problem yet. But at least I am aware of it thanks to you.
Of all my problems, and I have a bunch of medical problems, the Neurological issues concern me the most. I was born with CCHS, which many doctors now think is "SIDS". A baby just dies and no one knows why. Quick explanation is when normal people sleep, a part of their brain/CNS tells their heart to beat and tells them to breathe. My system does not tell me to breathe. That is why I sleep on a Ventilator. I have hit 30cmH2O for 30 straight minutes per the software program that monitors me. I have a lot of lung problems, including COPD, second hand smoke damage to my lungs = an excellent chance at Emphysema ---and I have never smoked one time. At least I will die that way, Neurological problems just make me wish I were dead!!
Oh well, I am pretty lucky. I have the greatest wife I could ever hope for, all 5 kids are talking to me and my Service Dog/Medic Alert Dog loves me. PLUS...I have a full stomach and a roof over my head. Life is good.......